Giving Care, Needing Care The Shomrei Ahuvim Support Group

Chanah loves her father deeply. She does her best to honor him and has always tried to be open and honest. She loves him so much that this afternoon she is deliberately telling him a lie.

Boruch is learning with his rebbe. He is not learning from his rebbe, rather, he is the one doing the teaching. Today he is showing his rebbe how to find Shema and ShemonehEsrei in a siddur.

Yaakov has always been devoted to his evening learning sessions with his chavrusa. He is careful to let nothing interfere with this long-term commitment. Tonight he is staying home to spend some time with his wife.

What Chanah, Boruch, and Yaakov have in common is that each of them cares for a mentally- or physically-impaired individual and faces all the usual challenges attendant upon this role, along with some special challenges that stem from their commitment to Yiddishkeit.

Expressing Love through Lying

Chanah is in pain. A person she loves is suffering from dementia. It may be Alzheimer’s disease, it may be Lewey Body dementia, or it may be one of 27 other known causes of mental impairment. But the exact diagnosis does not matter. What does matter is that her heart is breaking as she tries her best to help the person who once helped and cared for her.

Chanah’s father has been very upset since he cannot find his wife. He looked all over the house. He does not remember that she passed away eight years ago. Chanah knows that it would hurt him deeply to be reminded of this, so she is telling him instead that Ima is out shopping and will be home soon. She knows this will comfort Abba and he will forget the entire episode in a few minutes.

Chanah is practicing “therapeutic lying,” a caregiving technique that is taught by well-meaning counselors to people who are caring for those with dementias. The caregiver deliberately tells the affected person something that is not true, either to assuage or prevent the suffering they would experience if told the truth. Some coaches use the term “therapeutic fibbing” to lessen the harshness of the technique, but in any case, most caregivers in American society are readily willing to accept this practice, when needed, since they have been encouraged to do so by clinical professionals.

Even though Chanah will follow this course of action, it is not merely because an authority in a white coat told her to. For Torah-centered Jews, moral decisions do not rest with doctors. Rather, we seek the Torah perspective and consult rabbinic experts in navigating the often painful decisions of life. Chanah consulted with her rabbi, who gave her guidance on when to use this technique.

Lying: Halacha and Hashkafa

As an example of Torah consultation, I wrote to Rabbi Menachem Goldberger, who gave me the following perspective: To understand the Jewish position, we must distinguish between halacha (Jewish law) and hashkafa (Jewish outlook and philosophy). The former delineates moral and legal obligations; the latter provides moral recommendations and perspectives.

Under halacha, one should not tell a lie. Anything said must be the truth, although a person may, under certain circumstances, choose to be silent rather than say anything. Also under Jewish law, it is forbidden to harm another person, physically or mentally. In addition, there is an obligation to protect the other person from harm when possible.

Sometimes, these obligations come into conflict. The caregiver may have an obligation to bring comfort to the person who is suffering, yet under some circumstances, this cannot be done without lying. In some cases, the obligation to comfort the person outweighs the obligation to tell the truth. In other cases, the truth must be told, since the person with dementia would be able to handle it at his or her current state of functioning. Each case must be considered individually.

From the perspective of Jewish hashkafa, it is not good to tell a lie both because it dishonors the person hearing the lie and damages the character of the person telling it. Therefore, even when lying might be permitted for therapeutic purposes, it must not be done in a cavalier fashion, and the falsehood must be minimized to the greatest extent possible. Consider this true story: A man’s wife was crying that she wanted to “go home.” If he told her that she was already home in her own living room, she would not have believed him and would have been very upset. He did not want to lie to her, so he said, “If you go to sleep now, when you wake up in the morning you will be home.” This satisfied her, and she went to bed. He had indeed spoken the truth.

Challenges Facing the Torah Jew

Observant Jews face many unique problems in caregiving. What happens to the mitzvos of kibud av va’eim (honoring parents) when the caregiving roles reverse? How does a daughter honor a mother who has become childlike? Can an affected person’s kashrus be trusted in the kitchen? What about bringing non-Jewish helpers into the house? In addition to kashrus issues, there are also questions of yichud and negia. To what extent should a person with dementia be required or encouraged to follow the halachas of Shabbos, of kashrus? Can an impaired person who has always waited six hours after eating meat before eating dairy wait three hours instead in cases of need or mental anguish? People with dementia can undergo significant personality changes, and gentle people might become violent. How does a child deal with this? Is there an issue of mesira in notifying authorities if the caregiver is being abused? Can outside people be told about the dementia, or is this lashon hara? Since some dementias occur at younger ages and spouses still love each other, what are the implications for taharas hamishpacha?

Helping the Impaired Achieve

Especially in the earlier stages, people affected by dementias are still capable of leading valuable and meaningful lives. Craft projects and afternoon entertainment are helpful to some impaired people, but many Torah Jews will not be satisfied with these. Torah life is not passive, and we all require opportunities to continue to be active and useful in the world. Torah tells us that a person is always a person and must continue to be aware of his or her value.

There are opportunities for chesed available to people with varying degrees of disability. They can continue to support their families at whatever level of functioning they retain. They can volunteer in the community for such activities as mailings for community organizations. In one case, a social worker put together a group of physically- and mentally-impaired people who studied various tzedakas and made group decisions on which to support with the money they had.

Men are faced with a particular challenge. A man who has spent a lifetime learning needs to continue at whatever level he can. That is why we saw Boruch learning with his rebbe, who, although affected with dementia, still very much wanted to be involved with Talmud Torah. Affected people are often unable to attend community shiurim and become isolated and lonely. A prominent rabbi affected with Alzheimer’s was able to attend a shiur for a period of time. He was not able to follow many of the arguments in the Gemara, but much of his encyclopedic memory was intact, and he could contribute quotes of pesukim. After a while, he was no longer able to do this and could not take part in the shiur. Kind people learned with him as chavrusas at whatever level was possible. This was not just a chesed to an impaired individual, making him feel better. It may have been quite simple intellectually, but Talmud Torah is truly of great value at any level, just as is teaching a child the alef bais.

Some affected people require help following the davening in shul, and many may need help with physical activities such as putting on tefilin. Unlike teachers of children, however, teachers of persons with dementia are not rewarded by seeing academic progress. They must understand that studying Torah and merely slowing down the person’s decline also have profound value.

Balancing Needs and Mitzvos

The Bostoner Rebbe, zt’l, was very strict about people not missing learning sessions. Once a student missed a session, and the Rebbe asked him why. The student apologized and said that a friend of his had to visit a podiatrist for a minor procedure on his foot. This friend was sensitive to even small amounts of pain and was very anxious the evening before. The student skipped the class to spend the evening comforting his friend. The Rebbe then said. “It is I who should apologize. You did the right thing to spend the time with your friend.”

Yaakov’s wife had a chronic neurological disease that left her partially disabled. She was frequently in considerable pain and had difficulty caring for herself and the children. Yaakov skipped his class to help, comfort, and care for her. While Yaakov’s wife was in physical distress, she was mentally “normal,” yet both she and Yaakov were suffering. Yaakov faced a quandary: evaluating the relative seriousness of missing a learning session versus letting his wife cope with her situation alone. He had consulted with a rabbi to get the Torah perspective. Yaakov had also asked about other issues. What about physical care for his wife when physical contact would ordinarily not be allowed? What about modesty? How should he divide his limited monetary resources between tzedaka and his wife’s needs? How should he balance his wife’s and his children’s needs? What about his own needs (a caregiver who collapses or becomes sick due to stress is of no use to the family)? How does he handle the hashkafic and emotional issues he and his children face in dealing with his wife’s deterioration?

Support and Shomeri Ahuvim

All people giving care, whether for mentally- or physically-impaired loved ones, may be subject to significant stress. The title of a well-known book on caring for people with dementias is The Thirty-Six-Hour Day. Many caregivers will relate. Emotional pain, anxiety, agonizing decisions, feelings of helplessness, monetary issues, and total exhaustion are common.

Many helpful support groups for caregivers exist in the Baltimore area, but they may not deal with issues particular to Torah Jews, such as those raised in this article. To deal with this, Shomrei Ahuvim, a support group for Torah-observant caregivers, has been formed and meets biweekly, on Monday evenings at 8:00 p.m., in the Annex of Congregation Tiferes Yisroel (Rabbi Goldberger’s shul). All group activities are confidential, and those who wish merely to sit and listen are welcome. The group is appropriate for those providing care for people with dementias or physical disabilities.

In addition to the support group for caregivers, Shomrei Ahuvim welcomes volunteer help from those in the community who can support caregivers and help the impaired continue to live meaningful Torah lives. We seek men, especially, who can learn with impaired Torah Jews or anyone who can accompany impaired individuals to shul and help them follow along.

To obtain information about Shomrei Ahuvim, please call Andy Goldfinger at 410-578-8705 or via email at Andy.Goldfinger@verizon.net. There is also a web site at www.Shomrei-Ahuvim.org. The author would like to thank Yehoshua Goldfinger for his valuable comments and suggestions about this article.